I'm still kicking! My first post in a very longtime. Here's a synopsis of the goings on over the past few months:
Major business first. My latest MRI, CT, PET chest x-ray scans were run this week. the results are .... drum roll .... UNREMARKABLE. Man I love that word more and more as time goes by! This brings it to somewhere around 1-1/2 years Beast free, depending on your start date!
So, literally, I am still kicking. I have taken up playing soccer more in earnest these days. Boy does it feel great to be back out on the field with less trepidation. I am also still coaching the Greatest 5th, 6th & 7th Grade Girls Team Ever. Lot's of fun with some "girls' drama" now mixed in!
I now have a new puppy, Tanner! He is now 5 months old, a mixture of Boxer & Lab (a Boxador) and is very smart, fun, happy, and healthy. I get the greatest greetings when I come in the house, whether I've been gone a few hours or a few minutes. You gotta love that unconditional love a dog gives you.
I have turned 50 years old, and happy to say so. Of course having stared at the alternative to growing older, I have to say that I much prefer celebrating this milestone. Anyhow, I still feel, oh, about 35. Some might say that my maturity level is significantly lower still. In fact my sister accused me of being a "just a big kid" earlier this week. We celebrated the B-day with a pretty fantastic B-day party with some very notable folks there. I only wish I had more room to invite more people, but unfortunately the place was space limited!
I am working full time. (Some have asked about this so I feel the need to answer to all.)
My kids are fantastic; Stephen ready to graduate HS; Emily is a fine young lady in HS; and Brenna growing up more and more is a "tweener" now. They are truly one of the bright spots in my life and continue to impress me more & more all the time.
Lori is still an important part of my life, and I am grateful to have her attention.
My friends, ex-caregivers, family, are still concerned with my well being, and I am still blessed by there care and love.
My eating repertoire continues to expand, but there are still the basic restrictions. Simple carbs and sugar can still do a number on me, however, I keep experimenting and the errors are not as bad as they used to be.
My weight is holding steady, however not as high as I want it to be. I have to admit some frustration here, but not to the point that I am too bothered.
I'm saddened that the Capitals have been knocked out of the playoffs by Montreal (so all is not going well). Hopefully, Montreal can do the same to Pittsburgh!
Overall, things are going quite well and thus the best way to put it is (of course) ...
LIFE IS GOOD!
Friday, April 30, 2010
Wednesday, December 23, 2009
Ups 'n Downs, and NIH Results
So as not to keep everyone guessing until the end of a long rambling posting here, I thought I'd give the results early. Today's official NIH results to the CT scan, PET scan and MRI is (drum roll please) ... um ... er ... OK, OK here it is ... "Unremarkable." Everything is clear again. I have now spent the whole of 2009 without the Beast to be found in my body. A pretty remarkable year if you asked me.
Strolling down memory lane, it was about 11 months ago that I was diagnosed as having a recurrence of cancer. It was supposed to have metastasized to my liver (does anyone else remember that "happy" occasion?). Well with that diagnosis there were many ups & downs, mostly downs (candidate for "understatement of the year"). Fortunately the diagnosis was determined to be false and life has improved greatly since! One of the great fortunes of that misdiagnosis (and possibly the only fortune of it with the exception it being a mistake) is that I had the opportunity to get involved with NIH. To date I have not had a bad day at NIH. They were the ones that delivered me the good news that the Beast was not back as was thought at the time. They have also been the ones to continually to bring me the good news that my scan results are unremarkable. They continually bring me clean bills of health with great big smiles on their faces. What more can a guy ask for?!?! So thus we are at the end of a totally Beast-less year, the first of many I hope. I feel good, stronger and getting more so daily, happy, spirited and cured. Brenna asked me today when will it be official that I am actually considered cured. As she put it "a year is such a long time." However, in terms of being healthy, it seems as though illness was such a long time ago, and yet just a few weeks ago. I'll keep taking it 3 months at a time (per Toby's advise, taking one event at a time) which is when my next set of scans are to happen. So to answer Brenna's question, the bottom line is, one year down, four more to go until its official. In the mean time, watch me live.
Have a great holiday season and a happy & healthy new year to all.
LIFE IS GOOD!
Strolling down memory lane, it was about 11 months ago that I was diagnosed as having a recurrence of cancer. It was supposed to have metastasized to my liver (does anyone else remember that "happy" occasion?). Well with that diagnosis there were many ups & downs, mostly downs (candidate for "understatement of the year"). Fortunately the diagnosis was determined to be false and life has improved greatly since! One of the great fortunes of that misdiagnosis (and possibly the only fortune of it with the exception it being a mistake) is that I had the opportunity to get involved with NIH. To date I have not had a bad day at NIH. They were the ones that delivered me the good news that the Beast was not back as was thought at the time. They have also been the ones to continually to bring me the good news that my scan results are unremarkable. They continually bring me clean bills of health with great big smiles on their faces. What more can a guy ask for?!?! So thus we are at the end of a totally Beast-less year, the first of many I hope. I feel good, stronger and getting more so daily, happy, spirited and cured. Brenna asked me today when will it be official that I am actually considered cured. As she put it "a year is such a long time." However, in terms of being healthy, it seems as though illness was such a long time ago, and yet just a few weeks ago. I'll keep taking it 3 months at a time (per Toby's advise, taking one event at a time) which is when my next set of scans are to happen. So to answer Brenna's question, the bottom line is, one year down, four more to go until its official. In the mean time, watch me live.
Have a great holiday season and a happy & healthy new year to all.
LIFE IS GOOD!
Wednesday, December 16, 2009
Waiting Rooms at NIH
Hello anyone still checking in. Sorry its been so long. It would seem that life has gotten quite busy, a bit more normal, and somewhat less adventurous (at least where cancer is concerned) for me. To say that life is not adventurous is truly a misstatement though. There is adventure in many things. Since my last posting back in September this year much has happened. I have coached the greatest 5th & 6th grade girls soccer team in the world (with the help of my son Stephen and another good friend Tony), I have played a couple of full 90-minute games of soccer myself, I have hiked Sugerloaf Mountain with Lori and Sam the Wonder Dog and the mountains of the Shenandoah with Lori, Diego (aka Trevor),Theresa and Sam too. Just this past weekend I hosted my now 12 year old daughter's overnight birthday party with 11 guests (9 of which stayed over night). I have traveled for work, but unfortunately not for pleasure. Basically, life is still adventurous but in a much more enjoyable and healthy way these days.
For those wanting to keep track, I have gained some weight back but seem to be stuck between 135 & 139 lbs. I can't seem to break the 140 mark, but that to will come. My new year's resolution is to start working out more diligently so that more muscle mass will form.
However through all these adventurous goings on, the Beast still has its little reminders that it was with me. For example eating (although much easier these days) can still be challenging on occasion. The biggest reminder though is my quarterly scans at NIH. I just had a set of scans this past Monday and will learn the results on 23 December. I anticipate a Merry Christmas from the doctors and a very happy "Unremarkable" answer yet again. Basically I feel good and I believe what my body is telling me!
To change gears here, I would like to tell you all a bit of the NIH experience. Along with the scans, the blood letting for labs, the IV needles to inject contrasts, filling out forms to disclose that I am not allergic to iodine and numerous other things, much of my time is spent waiting in waiting areas. I know, this is totally surprising to consider but alas, it is a realism that medical care requires a bit of waiting around and self entertainment (reading, crosswords, IPOD, etc). One of the ways to entertain ones self is to "people watch." At NIH there are a great many types of folks: doctors, nurses, interns, lab techs, administrators, parking attendants, janitors, construction workers, patients, patient family & friends, old, young, kids adults, mobile, debilitated, accomplished destitute, local, foreign, southern, northern, western, mid-western, Hispanic, Asian, black, white, all creeds, all races, all colors, and all ages (just to name a few). It really is a potpourri of life. It is also easy to realize that the Beast is very indiscriminate as to who it chooses to infect as its victim. I had the pleasure of meeting an elderly African American gentleman while waiting for my CT scan. I'd venture to guess his age at about 70. A very pleasant man who traveled to NIH from Florida for his testing and care. He had been doing so for 4 years already. We talked a while, compared the taste of various barium flavors and then he was called for his turn to get viewed from the inside. Then, I also saw a young boy, probably about 8 years old, hooked up to his chemo IV's walking with his mother, pushing his IV tree, then sitting and awaiting his scan. I marvelled at the dignity and courage his mothered carried about her while having to watch her son be poisoned to be cured of the Beast. But even more incredible, I watch this young boy show such strength and yet such innocence while carrying on his battle with the Beast. This boy was certainly winning the battle in his way. These kids (and inevitably I see a few every time I go to NIH for testing) are just incredible. They know so much, albeit about things I certainly wish they didn't. They are so experienced, again about things I wish they weren't. And they are so inspirational. They smile, they laugh, they bring that certain youthful enthusiasm into a situation that can use a lift in spirits. I will not say that the kids I see at NIH are jumping for joy, believe me they are not. However, many are smiling, joking with their family and care givers, and those that are not, have typically displayed courage beyond explanation. Although saddened by what these children have to go through, I am inspired by how they meet their challenge, accept their burden, and carry on their battle with the Beast. I find these kids very inspirational. I only wish they all could have their happy ending to their battle.
Well, as for me, I am doing well. I am naturally curious about the results of my scans, and am also trying to get ready for the holidays. I wish happy holidays to you all and (of course) good health in the coming new year. And always remember ... LIFE IS GOOD.
For those wanting to keep track, I have gained some weight back but seem to be stuck between 135 & 139 lbs. I can't seem to break the 140 mark, but that to will come. My new year's resolution is to start working out more diligently so that more muscle mass will form.
However through all these adventurous goings on, the Beast still has its little reminders that it was with me. For example eating (although much easier these days) can still be challenging on occasion. The biggest reminder though is my quarterly scans at NIH. I just had a set of scans this past Monday and will learn the results on 23 December. I anticipate a Merry Christmas from the doctors and a very happy "Unremarkable" answer yet again. Basically I feel good and I believe what my body is telling me!
To change gears here, I would like to tell you all a bit of the NIH experience. Along with the scans, the blood letting for labs, the IV needles to inject contrasts, filling out forms to disclose that I am not allergic to iodine and numerous other things, much of my time is spent waiting in waiting areas. I know, this is totally surprising to consider but alas, it is a realism that medical care requires a bit of waiting around and self entertainment (reading, crosswords, IPOD, etc). One of the ways to entertain ones self is to "people watch." At NIH there are a great many types of folks: doctors, nurses, interns, lab techs, administrators, parking attendants, janitors, construction workers, patients, patient family & friends, old, young, kids adults, mobile, debilitated, accomplished destitute, local, foreign, southern, northern, western, mid-western, Hispanic, Asian, black, white, all creeds, all races, all colors, and all ages (just to name a few). It really is a potpourri of life. It is also easy to realize that the Beast is very indiscriminate as to who it chooses to infect as its victim. I had the pleasure of meeting an elderly African American gentleman while waiting for my CT scan. I'd venture to guess his age at about 70. A very pleasant man who traveled to NIH from Florida for his testing and care. He had been doing so for 4 years already. We talked a while, compared the taste of various barium flavors and then he was called for his turn to get viewed from the inside. Then, I also saw a young boy, probably about 8 years old, hooked up to his chemo IV's walking with his mother, pushing his IV tree, then sitting and awaiting his scan. I marvelled at the dignity and courage his mothered carried about her while having to watch her son be poisoned to be cured of the Beast. But even more incredible, I watch this young boy show such strength and yet such innocence while carrying on his battle with the Beast. This boy was certainly winning the battle in his way. These kids (and inevitably I see a few every time I go to NIH for testing) are just incredible. They know so much, albeit about things I certainly wish they didn't. They are so experienced, again about things I wish they weren't. And they are so inspirational. They smile, they laugh, they bring that certain youthful enthusiasm into a situation that can use a lift in spirits. I will not say that the kids I see at NIH are jumping for joy, believe me they are not. However, many are smiling, joking with their family and care givers, and those that are not, have typically displayed courage beyond explanation. Although saddened by what these children have to go through, I am inspired by how they meet their challenge, accept their burden, and carry on their battle with the Beast. I find these kids very inspirational. I only wish they all could have their happy ending to their battle.
Well, as for me, I am doing well. I am naturally curious about the results of my scans, and am also trying to get ready for the holidays. I wish happy holidays to you all and (of course) good health in the coming new year. And always remember ... LIFE IS GOOD.
Thursday, September 24, 2009
Where Were You Last Year
Quick ... what you were doing one year ago today?
Most of us have a few days in our lives where we can vividly remember an important event. Many times these moments are associated with tragic moments in history, for example: the Space Shuttle disaster; JFK's assassination (if your old enough); John Lennon's assassination; Sept 11 ... need I say more. Then there are the happy events in our lives: your marriage; the birth of your child; graduation from college; etc. The common characteristic of all these memories are that you were likely conscience for them. Thus the capability of remembering!
Did you remember what you were doing one year ago today? Most of us can't!
Well, not to brag, but I do. It was exactly one year ago today that I had surgery. One year ago I had 1/2 of my esophagus removed, my stomach removed, and most importantly, the Beast tumor removed. One year ago today I became NED (that's No Evidence of Disease). One year ago I was unconscious for most of a day that will live in my memory for as long as I live. Because of one year ago, the rest of my life may turn out to be a very long time. It seems inappropriate to me that such an eventful day should not be a part of my conscience. However, considering the extent of work that was done on my body, man am I glad I was unconscious for it!
So after a year, I have to say that its been a tough year in many ways. I'm still trying to find my new normal and that is a little frustrating at times. However, on the flip side, at least I'm around to find out what that new normal will be. Because of one year ago (along with the chemo before and after, as well as the radiation after) I can say I've had a year...tough or not. So, even though it's been a tough one, I can honestly say its been a great year. I can still honestly say that Life Is Good.
I hope you've had a great year too.
Most of us have a few days in our lives where we can vividly remember an important event. Many times these moments are associated with tragic moments in history, for example: the Space Shuttle disaster; JFK's assassination (if your old enough); John Lennon's assassination; Sept 11 ... need I say more. Then there are the happy events in our lives: your marriage; the birth of your child; graduation from college; etc. The common characteristic of all these memories are that you were likely conscience for them. Thus the capability of remembering!
Did you remember what you were doing one year ago today? Most of us can't!
Well, not to brag, but I do. It was exactly one year ago today that I had surgery. One year ago I had 1/2 of my esophagus removed, my stomach removed, and most importantly, the Beast tumor removed. One year ago today I became NED (that's No Evidence of Disease). One year ago I was unconscious for most of a day that will live in my memory for as long as I live. Because of one year ago, the rest of my life may turn out to be a very long time. It seems inappropriate to me that such an eventful day should not be a part of my conscience. However, considering the extent of work that was done on my body, man am I glad I was unconscious for it!
So after a year, I have to say that its been a tough year in many ways. I'm still trying to find my new normal and that is a little frustrating at times. However, on the flip side, at least I'm around to find out what that new normal will be. Because of one year ago (along with the chemo before and after, as well as the radiation after) I can say I've had a year...tough or not. So, even though it's been a tough one, I can honestly say its been a great year. I can still honestly say that Life Is Good.
I hope you've had a great year too.
Wednesday, September 16, 2009
Take that Beast
No cancer again! The answer is "unremarkable" again. The Beast is still beaten back. All in all a pretty good day.
Life is Good
Life is Good
Sunday, September 13, 2009
Adventure Reminiscence and Gratitude
Its the eve of another visit to NIH. Tomorrow I will get a CT scan, a PET scan, and an MRI. Another chance to prove to all that the Beast is gone. Another chance to verify that I'm still a survivor. Another step in getting to my new normal. I'll be sure to post the results after I get them on Wednesday.
In thinking back on all the goings on in this adventure, I realized that September 24 will mark the one year anniversary of my surgery where my stomach, some of my lymph nodes, and more importantly, the cancerous tumor were removed. I've taken the occasion to reminisce by looking back at the blogs of the time. Because I was in the hospital at the time, Lori was kind enough to post updates for me so that all may stay abreast of the goings on. I dare say that her writing style is certainly much better than mine! So, as I reminisce I think that I should also give thanks for all the support Lori has given me throughout this adventure. Lori has been there with me from the time I felt a pain in my throat. She was there for me when I went in for tests which ultimately diagnosed the tumor. She was there for me for all that led up to treatment, through the chemo prior to surgery, through surgery, through the hospital stay, through surgery recovery, through post surgery chemo, radiation, and treatment recovery. She was there for me when I was misdiagnosed with a recurrence and then she was there when it was proven that the Beast wasn't back. The bottom line is that Lori has been there for me throughout this entire adventure when the easier route would have been to leave. I have expressed my gratitude to many in the course of my missives in this blog, but I never really gave a proper thanks to Lori for all she has done for me throughout. So with all the help, support, love, effort, time, writing, worrying, inquiries made, care, and driving done on my behalf, all I can do is offer up a simple phrase of thanks. Thanks Lori, you've been the greatest throughout and I've been very lucky to have you along on this adventure.
In thinking back on all the goings on in this adventure, I realized that September 24 will mark the one year anniversary of my surgery where my stomach, some of my lymph nodes, and more importantly, the cancerous tumor were removed. I've taken the occasion to reminisce by looking back at the blogs of the time. Because I was in the hospital at the time, Lori was kind enough to post updates for me so that all may stay abreast of the goings on. I dare say that her writing style is certainly much better than mine! So, as I reminisce I think that I should also give thanks for all the support Lori has given me throughout this adventure. Lori has been there with me from the time I felt a pain in my throat. She was there for me when I went in for tests which ultimately diagnosed the tumor. She was there for me for all that led up to treatment, through the chemo prior to surgery, through surgery, through the hospital stay, through surgery recovery, through post surgery chemo, radiation, and treatment recovery. She was there for me when I was misdiagnosed with a recurrence and then she was there when it was proven that the Beast wasn't back. The bottom line is that Lori has been there for me throughout this entire adventure when the easier route would have been to leave. I have expressed my gratitude to many in the course of my missives in this blog, but I never really gave a proper thanks to Lori for all she has done for me throughout. So with all the help, support, love, effort, time, writing, worrying, inquiries made, care, and driving done on my behalf, all I can do is offer up a simple phrase of thanks. Thanks Lori, you've been the greatest throughout and I've been very lucky to have you along on this adventure.
Saturday, August 8, 2009
Deported
Oh happy day, I am missing my spare part. The port is gone, or as Lori says, I've been de-ported. I think of this as a symbol of my completion of cancer treatment. This was the last vest age of treatments. I had the port in me for about 13 months. It was a constant reminder and a continued reason to go back to the chemo clinic for its monthly flush. Now, free of the leash to the chemo clinic, I feel another step has been taken on my road back to my new normalcy. Fantastic!
So the next step is another set of scans in September to continue to prove that the beast is gone. There may be more of these steps for years to come, but the accomplishments of the past 13 months are things to be remembered. Thanks to all for all the help and support along the way. I don't know where I'd be without you.
Life is Good!
So the next step is another set of scans in September to continue to prove that the beast is gone. There may be more of these steps for years to come, but the accomplishments of the past 13 months are things to be remembered. Thanks to all for all the help and support along the way. I don't know where I'd be without you.
Life is Good!
Thursday, August 6, 2009
Close But Not Yet
Almost!
I had the Medi-Port removal all set for today, and then fate happened. Originally, my surgery was scheduled for 9:00 AM today, but the scheduler didn't allow for enough time for the procedure. Thus, I was rescheduled to 2:00 PM. Only that didn't work either. It seems that the surgery prior to mine was going to go into overtime, so I was re-scheduled again to 2:45. Well, as I was on the way to the appointment, I received another call from the nurse saying that the doctor would not be available until 3:30. So, I was re-scheduled yet again. Lastly, I got a call at 3:15 and guess what? Well I guess it just wasn't in the cards for today. So, bottom line, I'm scheduled for tomorrow at 3:15 and hopefully it will happen that I get to start the weekend with a little chest pain.
Keep your fingers crossed!
I had the Medi-Port removal all set for today, and then fate happened. Originally, my surgery was scheduled for 9:00 AM today, but the scheduler didn't allow for enough time for the procedure. Thus, I was rescheduled to 2:00 PM. Only that didn't work either. It seems that the surgery prior to mine was going to go into overtime, so I was re-scheduled again to 2:45. Well, as I was on the way to the appointment, I received another call from the nurse saying that the doctor would not be available until 3:30. So, I was re-scheduled yet again. Lastly, I got a call at 3:15 and guess what? Well I guess it just wasn't in the cards for today. So, bottom line, I'm scheduled for tomorrow at 3:15 and hopefully it will happen that I get to start the weekend with a little chest pain.
Keep your fingers crossed!
Saturday, July 25, 2009
Bionic No More
A little over a year ago I had the pleasure of having a "spare part" placed in my chest. This little device, known generically as a mediport, provided an entry location for chemotherapy to be injected into my veins. When it was placed in me I declared myself "the bionic man" in this very blog sight. The port was a great help in that it saved my veins form the onslaught of needles that were to follow and allowed Ethel (my favorite) to be a part of my life for a week at a time without monopolizing my arm. Unfortunately, it has also provided a reminder to me on a daily basis (every morning) that I have been a cancer victim and patient. While it remains in me I need to go back to the chemo clinic and have the port flushed out monthly so as to avoid infections from it. A monthly reminder of the clinic, the chemo experience, and another needle stick. The positive of the monthly clinic visits are the hugs and greetings I get from the nursing staff there, so I guess its not all bad!
As I am no longer a full fledged patient, but rather a recovering survivor (and it feels really good to say that!) I decided a while back that the "spare part" needs to be removed. I'll admit that losing the bionic man tag will be a blow to my ego, but its a blow that I'm willing to live with!
I e-mailed Dr. S (my chemo oncologists) to get the process started and to get a referral. Naturally nothing comes without debate in this cancer world. Dr. S wrote back that she recommended the port to stay in a year after radiation is completed in case of a (dare I say) recurrence. I responded that I would prefer to have it out and that it could be placed back in if a recurrence were to befall me (which according to Emily and my beliefs it won't...the Beast has been evicted). Dr. S has sent the referral.
So I am now scheduled to become a mere mortal with the removal of my bionic part on Aug 6. It will be an outpatient surgery and looks to be a great deal of fun. Finally, the last vestige of chemo days removed. No more daily reminders and monthly needle sticks. Yippee!
Have a good one all, and remember ... Life Is Good.
As I am no longer a full fledged patient, but rather a recovering survivor (and it feels really good to say that!) I decided a while back that the "spare part" needs to be removed. I'll admit that losing the bionic man tag will be a blow to my ego, but its a blow that I'm willing to live with!
I e-mailed Dr. S (my chemo oncologists) to get the process started and to get a referral. Naturally nothing comes without debate in this cancer world. Dr. S wrote back that she recommended the port to stay in a year after radiation is completed in case of a (dare I say) recurrence. I responded that I would prefer to have it out and that it could be placed back in if a recurrence were to befall me (which according to Emily and my beliefs it won't...the Beast has been evicted). Dr. S has sent the referral.
So I am now scheduled to become a mere mortal with the removal of my bionic part on Aug 6. It will be an outpatient surgery and looks to be a great deal of fun. Finally, the last vestige of chemo days removed. No more daily reminders and monthly needle sticks. Yippee!
Have a good one all, and remember ... Life Is Good.
Thursday, July 16, 2009
The Jig
Mary Pettibone Poole is credited with saying (back in 1938), and I quote, " He who laughs, lasts." What a great saying!
And we laughed more!!!
So a few weeks ago I took a road trip with Dave-o to visit TJ & Joan in Chicago. We also were able to get together with another old college pal and roommate, Jorge. Joan had a bunch of things planned including a Cubbies game, a visit tho the Chicago Art Festival, a party at her sister's home (Kathy & Dave), and then a trip to the Chicago Blues festival. A perfect weekend! The only thing I had to promise to Joan was to perform my Cancer Free Jig. Naturally, I made the promise!
I think a little explanation is due here! The Cancer Free Jig, or CFJ as it is uncommonly known to most, is a jig that I witnessed on my 1st day of radiation treatment (oh so long ago). As I was about to go into my first of many zaps, a lady was coming out of the lab with a certificate in hand. As soon as she made it through the door, she broke out into a spontaneous dance and declared it her CFJ. I was quite taken with it. It made quite the impression on me and when I told Joan about it she said that I was going to have to perform one too. She also said that she was going to have to see it. So, I agreed. Thus, the CFG promise made for the Chi-town Road Trip.
The trip went almost as planned. TJ, Dave-o, & I went to the Cubbies game with a stop at the Sears Tower (how touristy of us). The tower was great, the Cubs game was a blast (Cubs lost though) and the three of us laughed a bunch!
The next day we went to the art festival with Joan's sister & bro-in-law (Kathy & Dave), Jorge came along, and a bunch of other folks too. It made for a wonderful afternoon. And we laughed a bunch!
This was followed by the party at Kathy & Dave's place (a tradition for the apres art fest times as I understand it). As the night went on, we laughed a bunch. The party was a blast, people were fantastically nice. And we laughed a bunch more!
During the party, I promised to dance my CFJ, as long as I didn't dance alone. So there were a few volunteers that joined in. Here are the pictures to prove it.
And we laughed more!!!
Unfortunately, sometime after the jig was completed, I ended up falling down the stairs at Kathy & Dave's place. No need for long explanations here, suffice it to say that good times were had by all and we laughed a bunch. Joan's other sister Carol helped to break my fall a little (thanks Carol), but the net result was a nasty soreness on my left side.
The next day it took me about 20 minutes to work my way out of bed, literally. So it was off to the Emergency Room with Joan, TJ & Dave-o where we ran into a doctor with a great sense of humor. Unfortunately, it really hurt to laugh. Thus, I believe that the doctor, TJ, & Dave-o took it as a personal challenge to keep me guffawing. And we laughed a bunch!
After a few x-rays (Joan accompanying me all the way as she always seems to do), confirmation came in as to why I hurt when I laughed. I was the proud owner of 2 broken ribs on my left side. OUCH!! (should you have the opportunity to experience this, do yourself a favor and pass it by) This curtailed the laughter a bit, but not completely! There were some good snickers that ensued that were at my expense, naturally.
Unfortunately, the broken ribs put a damper on our trip to the blues festival, but I was still able to spend some great times with the the gang, and Jorge caught up to us too. And we laughed a bunch (even if it hurt a bit).
Well, the trip was much needed even if the price was a soreness in my rib area that reminded me of my post surgical pain. However, the stories that have propagated from the weekend has provided a great deal of laughs. And in those immortal words of Mary Pettibone Poole, "He who laughs, lasts" I plan to keep dancing, laugh a bunch more, and last a long time! Watch me live!
Life is good!
PS: Sorry it's taken so long since the last posting. I hope all is well with you all.
Saturday, June 20, 2009
Yesterday's Blur & Results
Yesterday was a basic blur. When you get an endoscopy, they knock you out so that you don't choke on the camera ... the tube ... and any other ancillary equipment that may be going down your throat to get the pictures. That said, I was aware of my surroundings as I went into the Endo Room and got to see Dr. L, who was to perform the procedure. It turns out that Dr. L is the same person that performed the endoscopy last year that proved to be pivotal in finding that I had cancer. Dr. L said that she remembered me from last year too! She's a very nice lady who was definitely rooting for a different outcome this year! Although I have to wonder if she actually remembered me or if she was just playing along. I'll give her the benefit of the doubt though and say its nice to be remembered.
Anyway, I was knocked out and the next thing I know I was being awakened by a nice nurse who helped me to my brother-in-law's car. Chris (my b-in-law) had the pleasure of telling me that the endoscopy showed no visual signs of the beast being present. Dr. L took a couple of biopsies and we're still awaiting the results from the lab. Given the way things are going, I have to say that I'm pretty confident that they'll come back "unremarkable" ... negative ... no evidence of disease (NED) ... clean ... or whatever way you may want to describe cancer free.
So, given the visual results (I'm going out on a limb here), I get to say ...
WATCH ME LIVE and LIFE IS GOOD!
Happy Father's Day to all you dad's out there.
Cheers all!
Anyway, I was knocked out and the next thing I know I was being awakened by a nice nurse who helped me to my brother-in-law's car. Chris (my b-in-law) had the pleasure of telling me that the endoscopy showed no visual signs of the beast being present. Dr. L took a couple of biopsies and we're still awaiting the results from the lab. Given the way things are going, I have to say that I'm pretty confident that they'll come back "unremarkable" ... negative ... no evidence of disease (NED) ... clean ... or whatever way you may want to describe cancer free.
So, given the visual results (I'm going out on a limb here), I get to say ...
WATCH ME LIVE and LIFE IS GOOD!
Happy Father's Day to all you dad's out there.
Cheers all!
Thursday, June 18, 2009
Endoscopy Eve
Tomorrow I'll get pictures taken of the my esophagus. I'll get to see the place where this crazy adventure began! Can't say I'm looking forward to it, but I'm glad I'm getting it done. Naturally I don't want a rerun of last year. Actually, I don't feel that there will be one. I'm rooting for some added closure here!
Fingers are crossed!
Fingers are crossed!
Wednesday, June 10, 2009
More "Unremarkable"
Hi!
Yesterday I had the pleasure of visiting NIH again. I really have an affinity for the place. So, my day there consisted of more blood work followed by a PET scan. Then I went for a CT scan (administered by a very proud parent of a just graduated St. Johns College High senior ... SJC is my alma mater and my nephew also just graduated from there ... made for nice conversation and something in common). Then I went off to get another liver MRI. Tests, tests, and more tests ... or rather scans, scans, and more scans.
Today I had the pleasure of going back to NIH to speak with Dr. Sch, Dr. TR and Tricia RN. They first thing Dr. Sch said to me was (and I quote), "Congratulations!" There was further discussions of unremarkable scan results. Bottom line ... The Beast is still not hanging about. A pretty good day!
Thus, my affinity for NIH these days. It seems that every time I go there I'm either tested, scanned or given good news.
By the way, the efforts of Dr. TR, Dr. Sch, Tricia RN, the lab technicians, the PET scan machine, the CT scan machine, the MRI machine and for that matter, the entire NIH facility are your tax dollars at work. I am truly lucky that they are working with me and have a continued interest in me for their research efforts. Because you all have a bit of a financial input here from payment of taxes, I feel I should say ... Thanks for the help all.
Life is Good ... and unremarkable again!
Yesterday I had the pleasure of visiting NIH again. I really have an affinity for the place. So, my day there consisted of more blood work followed by a PET scan. Then I went for a CT scan (administered by a very proud parent of a just graduated St. Johns College High senior ... SJC is my alma mater and my nephew also just graduated from there ... made for nice conversation and something in common). Then I went off to get another liver MRI. Tests, tests, and more tests ... or rather scans, scans, and more scans.
Today I had the pleasure of going back to NIH to speak with Dr. Sch, Dr. TR and Tricia RN. They first thing Dr. Sch said to me was (and I quote), "Congratulations!" There was further discussions of unremarkable scan results. Bottom line ... The Beast is still not hanging about. A pretty good day!
Thus, my affinity for NIH these days. It seems that every time I go there I'm either tested, scanned or given good news.
By the way, the efforts of Dr. TR, Dr. Sch, Tricia RN, the lab technicians, the PET scan machine, the CT scan machine, the MRI machine and for that matter, the entire NIH facility are your tax dollars at work. I am truly lucky that they are working with me and have a continued interest in me for their research efforts. Because you all have a bit of a financial input here from payment of taxes, I feel I should say ... Thanks for the help all.
Life is Good ... and unremarkable again!
Monday, June 8, 2009
Making Memories
Dave left me a comment for my last posting that has inspired me to write about a thought that I've had for while.
After the SNAFU'd diagnosis, a good friend of mine (Mike) offered himself up as my own Make-A-Wish foundation. You see, Make-a-Wish-Mike works for COMCAST TV and can get tickets to many different events. So he took it upon himself to get my kids and me tickets to opening day for the Nats. We had third row seats right by the Phillies dugout on the 3rd base line along with tickets to a pregame party (food, drink, and fun with friends). Emily proclaimed that she liked hanging out with the rich folks. The game was a blast and the Nats actually managed to keep it close, almost pulling off the upset. We had a blast & a great day of memories!
Next Make-a-Wish-Mike went and got us tickets to game 5 of the Caps vs. Rangers hockey series. MaW-Mike gave us tickets that were right behind the goal, 10 rows back. Pretty cool! If you recall this was the game where the Caps were down 3 games to 1 in the series and they need to win the rest of the way to get to the 2nd round of the Stanley Cup. Well, the Caps won, the kids had a blast, and I had a wonderful time with my kids and another set of great memories. The only thing we lost that night were our voices from cheering too much! Mike came with his son and had a few good memories too!
Make-a-Wish-Mike then took it upon himself to get us tickets to a day of soccer. We were treated to a double header at RFK stadium with the Washington Freedom opening the day and DC United finishing it up. Unfortunately Stephen couldn't make the game so Emily had the joy of bringing a friend. MaW-Mike got us tickets that were on the field. Basically we were so close to the field that we could have reached out and touched the players as they performed a throw-in. Very cool! Better yet, as the game ended, we were escorted to the side of the field with the team benches and our escort arranged for the girls to meet the players of their choice. Autographs, hugs, pictures, for the girls and I got to shake a few hands. Pretty cool again!
Good times all! Good memories all! Thanks Make-a-Wish Mike. It's pretty cool to have more great memories and some darn good fun! Life is good! Take that beast, more good living!
PS: Don't tell Make-a-Wish-Mike that the SNAFU diagnosis was reversed. He might come to his senses and stop giving us some really cool tickets!
After the SNAFU'd diagnosis, a good friend of mine (Mike) offered himself up as my own Make-A-Wish foundation. You see, Make-a-Wish-Mike works for COMCAST TV and can get tickets to many different events. So he took it upon himself to get my kids and me tickets to opening day for the Nats. We had third row seats right by the Phillies dugout on the 3rd base line along with tickets to a pregame party (food, drink, and fun with friends). Emily proclaimed that she liked hanging out with the rich folks. The game was a blast and the Nats actually managed to keep it close, almost pulling off the upset. We had a blast & a great day of memories!
Next Make-a-Wish-Mike went and got us tickets to game 5 of the Caps vs. Rangers hockey series. MaW-Mike gave us tickets that were right behind the goal, 10 rows back. Pretty cool! If you recall this was the game where the Caps were down 3 games to 1 in the series and they need to win the rest of the way to get to the 2nd round of the Stanley Cup. Well, the Caps won, the kids had a blast, and I had a wonderful time with my kids and another set of great memories. The only thing we lost that night were our voices from cheering too much! Mike came with his son and had a few good memories too!
Make-a-Wish-Mike then took it upon himself to get us tickets to a day of soccer. We were treated to a double header at RFK stadium with the Washington Freedom opening the day and DC United finishing it up. Unfortunately Stephen couldn't make the game so Emily had the joy of bringing a friend. MaW-Mike got us tickets that were on the field. Basically we were so close to the field that we could have reached out and touched the players as they performed a throw-in. Very cool! Better yet, as the game ended, we were escorted to the side of the field with the team benches and our escort arranged for the girls to meet the players of their choice. Autographs, hugs, pictures, for the girls and I got to shake a few hands. Pretty cool again!
Good times all! Good memories all! Thanks Make-a-Wish Mike. It's pretty cool to have more great memories and some darn good fun! Life is good! Take that beast, more good living!
PS: Don't tell Make-a-Wish-Mike that the SNAFU diagnosis was reversed. He might come to his senses and stop giving us some really cool tickets!
Friday, May 22, 2009
Resolve
On the eve of Memorial Day Weekend I find that I am a bit melancholy and pensive in thoughts. I would guess this to be appropriate given the reason for the holiday. Being pensive is not a bad thing every now and then as it gives one a chance to get in touch with ones thoughts. So, here's a couple of things that have crossed my mind over the course of the last few days.
In the course of the recent "downs & ups" of my Adventure I have found that there are those that believe in you, those that write you off readily, and then there are the majority of folks that land somewhere in between. Likely the in-betweeners are the wisest of the groups. That way they are able to expect the outcome, whatever it may be and prepare for it as best as possible. I have to admit that my thoughts could have been described as in-between at times too. I found that I was unwavering in my will to fight the Beast to the end, but I also had to contemplate the end should it not turn out as I hoped it would. Think of it as looking at parallel paths to very different destinations. Its very disconcerting to think that way.
Recently I have found great strength in something my daughter Emily said to me. In fact it was just a couple of evenings ago. She flat out told me that the Beast is gone and that it is not coming back. Wow, I really love her resolve. She has this force of personality that really could will the Beast away. In fact, she is quite the force to be reckoned with all on her own. I am comforted that she has no doubts when avowing that the Beast is not coming back. There is no questioning in her voice, mannerisms, or resolve. Thus, she told me that those that are still scared of what the outcome might be, just need to be convinced that the Beast is gone, like she is. Then their fear will be gone too. Its all quite simple with Emily's resolve.
Understandably, there are others that may question Emily's conclusion a bit more. People with more life experience than my 16 year old daughter (can she really be that old) often times have more trouble simply believing. Some that have gone through this with me in an up-close-and personal way may find it difficult to simply accept. I'll admit that in the back of my mind (OK probably not all the way in the back of it) I too wonder if this is just a reprieve, or is the Beast really going to stay gone for good. I guess only time will tell for sure. However, I can not go forward in fear, otherwise I will not be able to enjoy my life. I need to go forward with Emily's resolve in my heart too. I need to really live, otherwise the Beast will have been able to exact a toll on me, my family, those that I love, my friends, and everyone that helped me through the tougher times. If I should waiver on this resolve, well, then there is some measure of defeat, and I can not accept that. I want things to get back to some form of normal again. Sure, there are some fairly obvious physical changes that will never get back to normal. After all, I will never be able to replace a lost stomach! However, I am gaining weight and I have goals in mind to help motivate my physical recovery. Now I need to add to that with more internal strength. More of Emily's resolve perhaps. Whatever it is, I know this, the strength (both internal and physical) will come! With this strength, my new normal will continue to evolve.
So, now that the "down & up" part of the Adventure seems to be on an "up" for the foreseeable future, I will start to use one of my lesser recited mantras (which I know I used when I was first diagnosed) a bit more: Watch me Live. And of course, the greatest revenge that I can take upon the Beast is to live well. Take that Beast!
In the course of the recent "downs & ups" of my Adventure I have found that there are those that believe in you, those that write you off readily, and then there are the majority of folks that land somewhere in between. Likely the in-betweeners are the wisest of the groups. That way they are able to expect the outcome, whatever it may be and prepare for it as best as possible. I have to admit that my thoughts could have been described as in-between at times too. I found that I was unwavering in my will to fight the Beast to the end, but I also had to contemplate the end should it not turn out as I hoped it would. Think of it as looking at parallel paths to very different destinations. Its very disconcerting to think that way.
Recently I have found great strength in something my daughter Emily said to me. In fact it was just a couple of evenings ago. She flat out told me that the Beast is gone and that it is not coming back. Wow, I really love her resolve. She has this force of personality that really could will the Beast away. In fact, she is quite the force to be reckoned with all on her own. I am comforted that she has no doubts when avowing that the Beast is not coming back. There is no questioning in her voice, mannerisms, or resolve. Thus, she told me that those that are still scared of what the outcome might be, just need to be convinced that the Beast is gone, like she is. Then their fear will be gone too. Its all quite simple with Emily's resolve.
Understandably, there are others that may question Emily's conclusion a bit more. People with more life experience than my 16 year old daughter (can she really be that old) often times have more trouble simply believing. Some that have gone through this with me in an up-close-and personal way may find it difficult to simply accept. I'll admit that in the back of my mind (OK probably not all the way in the back of it) I too wonder if this is just a reprieve, or is the Beast really going to stay gone for good. I guess only time will tell for sure. However, I can not go forward in fear, otherwise I will not be able to enjoy my life. I need to go forward with Emily's resolve in my heart too. I need to really live, otherwise the Beast will have been able to exact a toll on me, my family, those that I love, my friends, and everyone that helped me through the tougher times. If I should waiver on this resolve, well, then there is some measure of defeat, and I can not accept that. I want things to get back to some form of normal again. Sure, there are some fairly obvious physical changes that will never get back to normal. After all, I will never be able to replace a lost stomach! However, I am gaining weight and I have goals in mind to help motivate my physical recovery. Now I need to add to that with more internal strength. More of Emily's resolve perhaps. Whatever it is, I know this, the strength (both internal and physical) will come! With this strength, my new normal will continue to evolve.
So, now that the "down & up" part of the Adventure seems to be on an "up" for the foreseeable future, I will start to use one of my lesser recited mantras (which I know I used when I was first diagnosed) a bit more: Watch me Live. And of course, the greatest revenge that I can take upon the Beast is to live well. Take that Beast!
Thursday, May 7, 2009
The Word "Unremarkable"
When one thinks of the word "unremarkable" what comes to mind? Go ahead come up with an answer, see what it is. I think of boring, not noteworthy, staid, steady, usual, unexciting. If someone were to describe you or your loved one as unremarkable, I bet it would be at least a little bit insulting to your sensibilities. It sure would be to mine! I don't think anyone wants to be known as unremarkable.
However, when dealing with the world of CT scans, PET scans, and MRI's while searching for evidence of cancer (the beast), the word "unremarkable" is the holy grail of words. All us of cancer types crave this word on the radiology reports when they provide the evaluation of our scan films. The "unremarkable" word can send us into tizzy feelings of giddiness, unending smiles, large sighs of relief, tears, and it can provide a new lease on life. I have been awaiting this word ever since Drs TR & Sch as well as Tricia RN at NIH told me they can not find the cancer beast that was thought to have returned. Unfortunately, the 3-phase-super-di-duper CT scan did not provide the "holy grail" word, but rather the more frustrating word "inconclusive." So, off we went to get an highly focused MRI of my liver as another attempt to get an answer. An answer which would be remarkable no matter what it might end up being. Yesterday afternoon I received the results of that MRI.
I was sitting at my desk at work when the phone call from Tricia RN came in. She said that my MRI came back unremarkable and then went into a bunch of details which I tried to focus on. I kind of got lost in what was being said so I had to ask her to clarify things. Then clarity showed through, the fog lifted, the confusion dissipated. Tricia RN said that the results of the liver MRI show no sign of cancer. I had a clean MRI. Not inconclusive not so-so, but rather unremarkable ... clean ... no cancer indicated! Tricia RN said that in her line of work they don't get to give out good news often enough, and this was indeed good news. Talk about understatements! She then faxed me a copy of the MRI report which states "the liver is unremarkable." Never have there been better words written as a descriptor of me!
I waited until this morning to provide the answer to the blog because I wanted to tell my kids, mom, sister (and her family), Lori, Joan, David, Pete, TJ, Janette, and some other folks first.
As a reminder that this is still an ongoing adventure, and to be extra cautious, NIH wants me to return in one month to repeat CT scans of the chest, abdomen and pelvic area; a PET scan of the torso; and another MRI of the liver. This is actually appealing to me (in a demented, twisted sort of way) in that I want to stay on top of "the beast" and continue to keep it at bay. That way I can claim overall victory some day.
For those that may be curious, NIH also reviewed the Kaiser CT scan and Washington Hospital Center PET scan again and believe that what was picked up was waste material in the bowel as opposed to a cancerous mass. Tricia indicated that this possibility was mentioned in the original reports from these scans.
So, I continue on this cancer adventure striving for unremarkable. I hope that my fellow cancer fighters that I have been talking to (Tom K, Mary, Sheri to name a few) will get to "unremarkable" and some others (Toby, Molly, Judith to name another few) will be able to stay at "unremarkable." Its a pretty great place to be!
Life is Good .... even if described as unremarkable sometimes.
However, when dealing with the world of CT scans, PET scans, and MRI's while searching for evidence of cancer (the beast), the word "unremarkable" is the holy grail of words. All us of cancer types crave this word on the radiology reports when they provide the evaluation of our scan films. The "unremarkable" word can send us into tizzy feelings of giddiness, unending smiles, large sighs of relief, tears, and it can provide a new lease on life. I have been awaiting this word ever since Drs TR & Sch as well as Tricia RN at NIH told me they can not find the cancer beast that was thought to have returned. Unfortunately, the 3-phase-super-di-duper CT scan did not provide the "holy grail" word, but rather the more frustrating word "inconclusive." So, off we went to get an highly focused MRI of my liver as another attempt to get an answer. An answer which would be remarkable no matter what it might end up being. Yesterday afternoon I received the results of that MRI.
I was sitting at my desk at work when the phone call from Tricia RN came in. She said that my MRI came back unremarkable and then went into a bunch of details which I tried to focus on. I kind of got lost in what was being said so I had to ask her to clarify things. Then clarity showed through, the fog lifted, the confusion dissipated. Tricia RN said that the results of the liver MRI show no sign of cancer. I had a clean MRI. Not inconclusive not so-so, but rather unremarkable ... clean ... no cancer indicated! Tricia RN said that in her line of work they don't get to give out good news often enough, and this was indeed good news. Talk about understatements! She then faxed me a copy of the MRI report which states "the liver is unremarkable." Never have there been better words written as a descriptor of me!
I waited until this morning to provide the answer to the blog because I wanted to tell my kids, mom, sister (and her family), Lori, Joan, David, Pete, TJ, Janette, and some other folks first.
As a reminder that this is still an ongoing adventure, and to be extra cautious, NIH wants me to return in one month to repeat CT scans of the chest, abdomen and pelvic area; a PET scan of the torso; and another MRI of the liver. This is actually appealing to me (in a demented, twisted sort of way) in that I want to stay on top of "the beast" and continue to keep it at bay. That way I can claim overall victory some day.
For those that may be curious, NIH also reviewed the Kaiser CT scan and Washington Hospital Center PET scan again and believe that what was picked up was waste material in the bowel as opposed to a cancerous mass. Tricia indicated that this possibility was mentioned in the original reports from these scans.
So, I continue on this cancer adventure striving for unremarkable. I hope that my fellow cancer fighters that I have been talking to (Tom K, Mary, Sheri to name a few) will get to "unremarkable" and some others (Toby, Molly, Judith to name another few) will be able to stay at "unremarkable." Its a pretty great place to be!
Life is Good .... even if described as unremarkable sometimes.
Friday, May 1, 2009
Super-Di-Duper CT Results
NIH has let me know that the results of the 3 Phase, High Resolution, "Super-Di-Duper" CT Scan are inconclusive. So they have schedule me for a High Resolution, "Super-Di-Duper" MRI of my liver on Tuesday to try and resolve any ambiguities. I have to admit that I'm sitting on pins & needles. At least it didn't come back positive!!! Stand by, there's more to come!
Wednesday, April 29, 2009
Bob Marley Is Right - Very Right!
The immortal Bob Marley sang a song entitled "Three Little Birds" where he sings (and I quote) " Don't worry...about a thing ....... Cause every little thing ... Is gonna be alright." He repeats this line many times in the song. Well for the past couple of days, I have been singing this in the Mini (my recovery car) with the stereo blasting it out and the sunroof and windows opened for all to hear. In case you haven't figured it out yet, music is very important to me!
I have been visiting NIH the past few days (Friday 4/25, Tues 4/28, and today). They have been testing me in ways that I never thought I'd be tested. On Friday they ran a battery of tests which included: blood work (I do have blood in my veins); ultrasounds of my arms & legs (to prove that my veins & arteries are working without clots ... all is well there); ECHO & EKG (yep, I do have a heart despite popular belief); a chest x-ray (just in case the ECHO & EKG lied, but still confirms I have a heart); a brain MRI (got a brain) so to steal my son's line, I might still need to get some courage :-) ; and then a CT scan of my chest, abdomen, and pelvic region. Yesterday, I had a PET scan to confirm the cancer. Today I had a pulmonary test to prove that I can breath.
After all this testing, I met with Dr. TR (a fellow working at NIH on the clinical trials) and Dr Sch. (the lead of the clinical trials) of NIH. Here's the good part ...
The NIH doctors informed me that they can not find any evidence of disease. After all the scans, tests and reviews, they can not find the tumor on my liver.
They can not find the tumor which is the cause for all the concern. Bottom line here is that the NIH doctors are very confident that their findings are correct after reviewing my previous CT & PET scans and reports and then comparing them to the latest scans & reports. To use their words, I'm a great candidate for the clinical trial except that I do not have anything to run the trial against at this time.
My sister & I were both flabbergasted and were on the verge of disbelief. In an effort to convince us and to prove out the most recent results, I am scheduled for a "3-phase" CT scan on the liver tomorrow. This scan is a much higher resolution scan and more focused on the area of concern. Thus, if this high resolution, 3-phase, "super-di-duper" CT scan comes back negative, then the veil-of-question that I have will be lifted, and I will truly believe these results (although I pretty much believe at this point, I just don't want to move along without leaving every stone unturned).
What a day! Talk about a 180 degree turn! Can we use the term roller coaster here! A month ago I was recovering and a survivor; then all of a sudden I was Stage 4 and fighting for my life; now I may be back to recovering survivor. Wow!
Sorry if this roller coaster is tough on all, I'm just reporting things as I get them! However, with this tidbit of news I can only say that...
Life is Good and looks to be getting better again!
I have been visiting NIH the past few days (Friday 4/25, Tues 4/28, and today). They have been testing me in ways that I never thought I'd be tested. On Friday they ran a battery of tests which included: blood work (I do have blood in my veins); ultrasounds of my arms & legs (to prove that my veins & arteries are working without clots ... all is well there); ECHO & EKG (yep, I do have a heart despite popular belief); a chest x-ray (just in case the ECHO & EKG lied, but still confirms I have a heart); a brain MRI (got a brain) so to steal my son's line, I might still need to get some courage :-) ; and then a CT scan of my chest, abdomen, and pelvic region. Yesterday, I had a PET scan to confirm the cancer. Today I had a pulmonary test to prove that I can breath.
After all this testing, I met with Dr. TR (a fellow working at NIH on the clinical trials) and Dr Sch. (the lead of the clinical trials) of NIH. Here's the good part ...
The NIH doctors informed me that they can not find any evidence of disease. After all the scans, tests and reviews, they can not find the tumor on my liver.
They can not find the tumor which is the cause for all the concern. Bottom line here is that the NIH doctors are very confident that their findings are correct after reviewing my previous CT & PET scans and reports and then comparing them to the latest scans & reports. To use their words, I'm a great candidate for the clinical trial except that I do not have anything to run the trial against at this time.
My sister & I were both flabbergasted and were on the verge of disbelief. In an effort to convince us and to prove out the most recent results, I am scheduled for a "3-phase" CT scan on the liver tomorrow. This scan is a much higher resolution scan and more focused on the area of concern. Thus, if this high resolution, 3-phase, "super-di-duper" CT scan comes back negative, then the veil-of-question that I have will be lifted, and I will truly believe these results (although I pretty much believe at this point, I just don't want to move along without leaving every stone unturned).
What a day! Talk about a 180 degree turn! Can we use the term roller coaster here! A month ago I was recovering and a survivor; then all of a sudden I was Stage 4 and fighting for my life; now I may be back to recovering survivor. Wow!
Sorry if this roller coaster is tough on all, I'm just reporting things as I get them! However, with this tidbit of news I can only say that...
Life is Good and looks to be getting better again!
Wednesday, April 22, 2009
I Feel Good - The Great Irony
Singing ( actuallyyelling) to the tune that James Brown made famous, I have to admit that "I FEEL GOOD, LIKE I KNEW THAT I WOULD NOW." This is the irony that I find myself in. I have been recovering from radiation/chemo for quite a while now. My stamina is still building, my appetite is getting better, food is enjoyable again, my repertoire of culinary delights continues to expand, and I find that I can eat things now that I haven't been able to in the past. Heck, I've even been able to stop taking Caumadin (thank goodness) so I don't feel (in true medical terms) yucky. Overall, I feel as physically good as I have in the past year or so.
So how can it be that I'm technically more sick than I've ever been in my life? I find this to be completely ironic. It would border on comical if it weren't so serious. I am truly amazed by all this!
OK, enough lamenting! Here's what's happening these days.
I have been in contact with both NIH and Johns Hopkins. Both organizations show a true interest in me as a possible clinical trial candidate. Quite honestly, if this were compared a sports free agency negotiation, I think that I might actually hold the best hand for negotiating with the teams vying for my particular inclusion in their trials. Essentially, the type of cancer that I present to them is fairly rare. Thus, the chance to use me as a data point in their studies probably has them figuratively salivating over my affliction. This poses another irony. I'm desired for the difficulty of curing my cancer, but I'm in this position because of the difficulty of curing my cancer. Ugh, can become too philosophical if I keep this up. So, I think I should stop this train of thought and get back to updating you all.
OK, both organizations show an interest. I have sent reams of info to NIH & JHU. These include CT & PET scan reports from the beginning to the most recent ones done. Also sent are: pathology reports; blood test results; info from my surgeries; pathology samples & slides from surgery and from my initial diagnosis; post operative reports; and more things than I can remember. I actually sent one organization a 27 page fax trying to answer all their requests and then received another request from them wanting more things that I had to get to them from the Washington Hospital Center. Indeed, this required WHC to get permission to release information to JHU and then another release form to send NIH information. I'm beginning to believe that the bureaucracy to get medical things done is worse than the government bureaucracy (and I work for the government). Please, Mr Obama, get medical electronics records passed through soon!
So, the bottom line is that I am making progress in getting accepted by a clinical trial and expect to hear back anytime from NIH. I already have an appointment with JHU with a couple of their doctors to take a look at me and discuss options.
I have also been generously offered by Molly & Don (friends in Houston) to make use of their home as a place to stay should I want to consider treatment at MD Anderson Cancer Center (where Molly was treated and cured). Mary (my friend with the the brain tumor who I've never actually met) has offered her mother's home to me as a place to stay should I want to get looked at by the Mayo Clinic where she is going to for her treatments. It still amazes me how people rise to the occasion to help in these crazy times. (More about this to come still in my next blog)
I believe that once I get all the info regarding my options, the most difficult part will making my decision as to which path to take. I have absolutely no idea how I will do this. I'll likely discuss it with my sister & brother-in-law; some of my close friends; my current doctors; and then pray for some insight. Then after all the input, analysis, and advise I'm pretty sure that the final decision will come from what I feel in my gut is the right way to go. Man, talk about the decision of a lifetime.
Well despite all that is happening, I can still relish in the fact that "I FEEL GOOD." Thanks for the yell, James Brown! It sure reminds me that Life is Good.
So how can it be that I'm technically more sick than I've ever been in my life? I find this to be completely ironic. It would border on comical if it weren't so serious. I am truly amazed by all this!
OK, enough lamenting! Here's what's happening these days.
I have been in contact with both NIH and Johns Hopkins. Both organizations show a true interest in me as a possible clinical trial candidate. Quite honestly, if this were compared a sports free agency negotiation, I think that I might actually hold the best hand for negotiating with the teams vying for my particular inclusion in their trials. Essentially, the type of cancer that I present to them is fairly rare. Thus, the chance to use me as a data point in their studies probably has them figuratively salivating over my affliction. This poses another irony. I'm desired for the difficulty of curing my cancer, but I'm in this position because of the difficulty of curing my cancer. Ugh, can become too philosophical if I keep this up. So, I think I should stop this train of thought and get back to updating you all.
OK, both organizations show an interest. I have sent reams of info to NIH & JHU. These include CT & PET scan reports from the beginning to the most recent ones done. Also sent are: pathology reports; blood test results; info from my surgeries; pathology samples & slides from surgery and from my initial diagnosis; post operative reports; and more things than I can remember. I actually sent one organization a 27 page fax trying to answer all their requests and then received another request from them wanting more things that I had to get to them from the Washington Hospital Center. Indeed, this required WHC to get permission to release information to JHU and then another release form to send NIH information. I'm beginning to believe that the bureaucracy to get medical things done is worse than the government bureaucracy (and I work for the government). Please, Mr Obama, get medical electronics records passed through soon!
So, the bottom line is that I am making progress in getting accepted by a clinical trial and expect to hear back anytime from NIH. I already have an appointment with JHU with a couple of their doctors to take a look at me and discuss options.
I have also been generously offered by Molly & Don (friends in Houston) to make use of their home as a place to stay should I want to consider treatment at MD Anderson Cancer Center (where Molly was treated and cured). Mary (my friend with the the brain tumor who I've never actually met) has offered her mother's home to me as a place to stay should I want to get looked at by the Mayo Clinic where she is going to for her treatments. It still amazes me how people rise to the occasion to help in these crazy times. (More about this to come still in my next blog)
I believe that once I get all the info regarding my options, the most difficult part will making my decision as to which path to take. I have absolutely no idea how I will do this. I'll likely discuss it with my sister & brother-in-law; some of my close friends; my current doctors; and then pray for some insight. Then after all the input, analysis, and advise I'm pretty sure that the final decision will come from what I feel in my gut is the right way to go. Man, talk about the decision of a lifetime.
Well despite all that is happening, I can still relish in the fact that "I FEEL GOOD." Thanks for the yell, James Brown! It sure reminds me that Life is Good.
Thursday, April 9, 2009
An Amazing Transformation
Its amazing how things can change in a moment's notice. Back in January, I was one of the happiest people on earth having just completed my last radiation therapy. I was NED (No Evidence of Disease), I kept the doctors from putting a feeding tube in me, and I was on my way back to health. Over the last six weeks, I have been taking a cancer survivor's class at the Wellness Center with my chemo mentor, Toby and 23 other survivors. My taste buds have almost come back from the assault of chemo, and I've been able to learn how to eat again with more knowledge about foods I'm OK with coming daily. Most things were going well for me with some exceptions.
Given all the good things coming my way and my 1st set of scans being taken, I was sure that all would go like clock work. I guess you could say I was feeling pretty confident. So after the CT scan came back with some cause of concern, I felt a bit of concern, but not too much. Then when the PET scan continued the concerns, I felt a bit less confident. I had an appointment to see Dr. S (my chemo oncologist) to get an answer regarding the results.
The appointment is when the great transformation occurred. Dr S informed me that the CT & PET scans show that the cancer was indeed back. Not to mention that it had metastasized to my liver. Thus in one fatal swoop I went from a celebrating cancer survivor who was NED and on the road to recovery, to a Stage IV cancer victim with limited options. An amazing transformation!
I was told by Dr S yesterday & Dr. P (my oncology surgeon) today that they have exhausted all the tools that they have in their toolbox. Thus my options are these:
1. Clinical Trials: experimental treatments going on at places like NIH, Johns Hopkins, or other research centers.
2. Second Line of Chemo: The chemo treatment that I have received was considered the strongest thing that could be thrown at this cancer. Apparently, the cancer did not respond as hoped. Thus, a different set of chemos can be considered, however this set would not be as strong and therefore there is very little confidence that the results would be anything less than what would be desired.
3. Live & Let Live: Basically the statement here was enjoy the rest of my life without doing anything more to fight the disease. As many of you know, this really isn't my style. I'm just hate to lose too much!!!
So without further ado, we are investigating clinical trials with NIH & Johns Hopkins.
The fun is just beginning again. Looks like there is a lot more to go in this cancer adventure. Wish me luck and say a prayer. I can certainly use it!
PS: On a side note, I was able to take a bit of an escape from this craziness by spending much of the day with Lori and Sam (Lori's dog). It was a wonderful respite and much needed. Thanks Lori (and Sam)!
Given all the good things coming my way and my 1st set of scans being taken, I was sure that all would go like clock work. I guess you could say I was feeling pretty confident. So after the CT scan came back with some cause of concern, I felt a bit of concern, but not too much. Then when the PET scan continued the concerns, I felt a bit less confident. I had an appointment to see Dr. S (my chemo oncologist) to get an answer regarding the results.
The appointment is when the great transformation occurred. Dr S informed me that the CT & PET scans show that the cancer was indeed back. Not to mention that it had metastasized to my liver. Thus in one fatal swoop I went from a celebrating cancer survivor who was NED and on the road to recovery, to a Stage IV cancer victim with limited options. An amazing transformation!
I was told by Dr S yesterday & Dr. P (my oncology surgeon) today that they have exhausted all the tools that they have in their toolbox. Thus my options are these:
1. Clinical Trials: experimental treatments going on at places like NIH, Johns Hopkins, or other research centers.
2. Second Line of Chemo: The chemo treatment that I have received was considered the strongest thing that could be thrown at this cancer. Apparently, the cancer did not respond as hoped. Thus, a different set of chemos can be considered, however this set would not be as strong and therefore there is very little confidence that the results would be anything less than what would be desired.
3. Live & Let Live: Basically the statement here was enjoy the rest of my life without doing anything more to fight the disease. As many of you know, this really isn't my style. I'm just hate to lose too much!!!
So without further ado, we are investigating clinical trials with NIH & Johns Hopkins.
The fun is just beginning again. Looks like there is a lot more to go in this cancer adventure. Wish me luck and say a prayer. I can certainly use it!
PS: On a side note, I was able to take a bit of an escape from this craziness by spending much of the day with Lori and Sam (Lori's dog). It was a wonderful respite and much needed. Thanks Lori (and Sam)!
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